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  • Does ALS affect your hearing?
    No, I hear just fine however, people assume i cannot when i use tech to speak so the raise there voice or try sign language until i stop them.
  • Do you feel full or hungry?
    Yes, I feel full and hungry like normal. I even feel cold or hot liquids as they go in.
  • Does the trach hurt?
    Not after a week or so during the healing phase. However, it can get irritated and itch.
  • What is the ALSFSR Score?
    The ALSFRS-R is an ALS disease-specific severity score reflecting motor impairment and functional deterioration. Measuring 12 aspects of physical function, ranging from one's ability to swallow and use utensils to climbing stairs and breathing. Each function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimum total score of 0.
  • Is having ALS painful (muscle cramps/soreness)?
    I can only answer this for me. I do not feel any muscle pain as it relates to the muscle dying. However as the muscle dies that support joints i have pain similar to arthritis. My hands scapula and back has been very painful lately.
  • If you cannot speak how do you communicate?
    I use APPs on my phone which allows me to write my my thoughts, then use the speaker to verbalize them.
  • Do you still taste and smell?
    Yes
  • Can you eat or drink?
    No I am 100% tube fed.
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